On bodies, illness, and the quiet privilege of not having to notice
I love early morning hikes with my dog. The sound of my feet crunching the dirt beneath me, my dog stopping to sniff, the sun rising. Sometimes I’ll just walk and let my mind wander. Other times, I’ll practice a breathing technique or try not to think of anything at all.
In these moments, I’m not thinking about my body.
I’m not thinking about whether I’ll make it up the inclines or get short of breath. I know I can hike the whole four miles, or more if I want to. My body is capable.
Then I think of my clients, whose bodies aren’t so cooperative.
My 90-year-old client, Janet, has knee pain. For various reasons, surgery is no longer an option. Yet she lives independently, drives, and even runs an Airbnb business. Except for her knee, she’s doing quite well.
But every day her knee reminds her it’s there. She has to work around it, tend to it, figure out how much she should do that day.
Or I think of my friend Deb, who one day became dizzy.
It wasn’t the common scenario where crystals in the inner ear become dislodged. When that happens, your brain thinks you’re spinning, and it’s often as simple as manipulating the crystals to stop the spinning. Hers was more complicated: months of specialists and medication trials while her world kept shrinking because she couldn’t trust that she wouldn’t fall, lose her lunch, or become unsteady without warning.
She couldn’t drive. She couldn’t work. She’d wake up wondering—and a little terrified—whether this was her new life.
And I think of Carey.
He used to run five miles a day while teaching. Then, in retirement, he’d walk nine holes of golf five days a week. Now, on some days, he can’t even walk to the end of his street.
“COPD, they tell me.”
He describes how much it has limited him. How he’s afraid to overdo it because he’s not sure he’ll be able to catch his breath. Playing golf requires a daily calculation—including how much it costs to rent a cart every time he plays.
A year ago, none of these people had to think much about these parts of their bodies.
Now they do.
As a physical therapist, I understand the body pretty well. It’s my job to. I understand why the surgeons don’t want to operate on Janet and also why she hurts. I don’t know the source of all Deb’s symptoms, but I’ve worked with enough people with dizziness to understand how profoundly it can affect function. I’ve also worked with plenty of people who struggle to breathe.
None of these conditions are especially unusual in healthcare.
But knowing what’s happening in a body is way different from knowing what it’s like to live in that body.
I measure things for a living. How far someone can bend a knee. How long they can stand on one leg. How far they can walk before they need to stop. Sometimes I ask people to rate their pain on a scale from zero to ten so we can track progress.
Those things matter.
But they don’t tell me what it’s like to think about your knee before accepting an invitation somewhere. Or to stop driving because you no longer trust what your body might do. Or to look down your own street and wonder whether your lungs will get you to the end of it and back.
Maybe that’s what changes when the body stops being silent. It doesn’t just hurt or become dizzy or breathless. It starts entering into decisions it never used to be part of.
Can I go? How far is it? Will there be stairs? What if I get dizzy? What if I can’t catch my breath? What if tomorrow is worse because of what I do today?
A body that once carried you quietly through your life can begin negotiating the terms of it.
I didn’t have a name for this experience for a long time. Then I came across the philosopher Drew Leder’s idea of dys-appearance—not disappearing, but the body forcing its way into awareness through pain, illness, or dysfunction. When things are working well, we don’t think about our body’s functions. When something goes wrong, we do.
I learned later the bioethicist Kristin Zeiler had wondered whether the body could also become vividly present in more positive ways—pregnancy, pleasure, the felt sense of being fully in your body. She called that eu-appearance.
The terms gave me language for something I had already seen in my patients and, on good days, in myself. Most mornings I still get to choose when to pay attention to my body. That’s a gift.
When I practice yoga—hands on the mat, hips high in downward-facing dog—I feel the stretch through my legs and spine. When I swim, I feel the water against my skin, my feet pushing off the wall of the pool, my arm slicing through the water, the rhythm of my breathing as I propel myself forward.
My body feels vitally present during these activities.
I choose to notice it.
That’s different from a knee that demands attention every time you stand up. Or dizziness that makes you scan the room for something to hold onto. Or lungs that force you to calculate how far you can walk.
Maybe that’s part of what illness changes. The body doesn’t simply become more noticeable. We lose some choice about when to notice it.
But we don’t have to become our illness.
I don’t think the work is to make the body silent again, or to try not to feel discomfort. Sometimes that’s impossible. Maybe the work is to keep the body that hurts from becoming the only part of ourselves we feel.
A painful knee can coexist with other sensations—the strength of your legs, the satisfaction of walking farther than you thought you could, the softness of a child’s hand in yours, or the comfort of warm pajamas against your skin. Breathlessness can be frightening and still coexist with the feeling of sun on your face or spending time with a friend.
The body can demand our attention without deserving all of it.
I think of Janet.
She hasn’t stopped being competent or independent. She’s still running her Airbnb and buying cute hand towels to display. Her knee can be a nuisance. Sometimes it limits her. But it hasn’t stopped her from doing the things that bring her joy.
As I hike with my dog, I try to remember how fortunate I am to let my mind wander. To walk. To squat to pick up dog poop. To run up a hill if I choose.
Most mornings, my body asks very little of me. My legs are strong. My lungs keep pace. I don’t have to think about any of it.
But sometimes I do.
I notice.
And I try not to take that for granted.